Tag Archives: Information and exclusion

Challenges of Language, Accessibility and Ethics of Interviewing in the Digital Space

Teresa Piacentini, Nughmana Mirza and Molly Gilmour have produced a Sage Methods Online Research Case Study that helps researchers think through and navigate online methods especially in working with those marginalised by language, economic security and gender.

The case study can be accessed here.

‘Why have we been forgotten?’ What lockdown is like for prisoners’ families

In this blog, Betsy Barkas explores the impacts of the lockdown on those who have spent it separated from a loved one in prison. Reduced contact with loved ones and a lack of information has increased the strain on people affected by prison, who have been ‘doubly hit’.

To support the suppression of the Covid-19 virus, governments have been encouraged by the World Health Organisation to adopt a policy of controlled release of those unnecessarily detained. In Scotland over the late spring of 2020 some 350 people (as reported by the Daily Record) were released. Everybody else was kept confined to their cell for up to 23 and a half hours per day, effectively in conditions of solitary confinement. In-person visits were cancelled, and access to communal phones was restricted. Three to four months later, new ways for prisoners to stay in touch with loved ones began to be introduced. These included virtual visits, physically distanced in-person visits, and restricted mobile phone use for the equivalent of ten minutes per day.

In this blog, we focus on what life was life for people affected by a loved one’s imprisonment during the first six months of this new regime. Isolation and a lack of support with mental health was widely cited by prisoners as serious issues for them during this time, shown by our analysis of a survey of over 80 prisoners across 14 of Scotland’s prisons (discussed in Things are ‘the same’: Complicating OK narratives of prisoners during lockdown and Mental health in Scottish prisons under pressure during lockdown). We found that these impacts rippled out beyond the prison walls to affect their loved ones outside, who feel let down and forgotten.

Worries about those inside

People in prison are individuals and experienced this period in different ways. We have heard (and discussed elsewhere) some positive experiences, for example for those who experienced this time as an opportunity to reflect, or as a reprieve from some of the more difficult aspects of regular prison life. In keeping with this overall pattern, some family members told us about some positives experienced by their loved ones. However, concern was their dominant feeling. One mother underlined the particular importance of face to face contact with her son in prison:

I had all these visions, nightmares, horror stories, thinking [about] where he is – could this be happening? Could that be happening? And I just worried constantly. And when I didn’t see him, I didn’t know whether he was okay, because I like to look at him. I like to look at him in the eye and say, are you okay? Can I believe you are okay? (Mother of son in prison)

For some people, their previous experiences of interacting with the prison and distrust had increased their worry. As one person said of her partner:

His head is just melted, but we’re not allowed to say anything to [staff] about that, because the stigma of mental health [in prison] is quite bad. And if you mention a hint of having a slight depression or a slight upset they put you in segregation, and then I wouldn’t be able to hear from him at all. (Partner of man in prison)

People who had been used to seeing their partner or child in person regularly, one or even multiple times a week, struggled with the sudden stop of visits in late March with no idea when they would resume. Initially, communication was squeezed instead into a brief few minutes’ conversation using the communal phone in the hall. Reduced access to the phone meant that prisoners had to choose between maintaining contact with a partner or a parent, or other support such as a recovery sponsor, while also managing risk of Covid-19 transmission.

One person explained that she hadn’t been able to speak to her son at all during this period as there was no sanitiser to clean the communal phone after the last person, and due to his own health condition he felt it was too risky to use it. They wrote to each other instead, and so it was by letter that he informed her that during his daily half hour break from his cell he’d witnessed another prisoner’s serious suicide attempt.

He was really upset about that. He struggled to cope with that, because normally the hall that he’s in is very settled. There’s no real problems. But this chap obviously just couldn’t cope with being locked up for almost 24 hours a day. Banging his door all the time. And there was other prisoners like that as well. So my son had all that as well to deal with, which was incredibly hard for him. (Mother of son in prison)

While the early release programme benefitted a restricted group of prisoners who were nearing the end of their sentence, the pandemic’s impact on court and prison processes has led to increased numbers of people on remand (those prisoners with least access to activities and jobs). Others had expected transfers cancelled at the last minute. These issues created huge impacts for their loved ones. A partner of a man in prison told us she had been looking forward to spending time with him following an expected transfer to the open estate, but on the day this journey was scheduled to take place, lockdown was announced and he spent the next six months locked down for 23 hours per day in his existing cell instead. This turn of events had left her ‘devastated’. When we spoke to her in September, she still didn’t know when she and their daughter would see him and told us the uncertainty felt like ‘being on eggshells’.

‘Doubly hit’

At a time that was stressful anyway, reduced contact with loved ones in prison was another emotional burden to bear. Prisoners’ access to communal phones was limited, and mobile phones allowed an average of ten minutes call per day. We spoke to one person who was shielding due to her long-term health condition and, as a result, lost her full-time job and found herself suddenly confined to her house with two young children and making a Universal Credit claim. This was an experience she described vividly as ‘like a train hitting you’. The lack of contact with her partner was extremely hard to bear, a period of time she had counted by the day:

‘[It] doubly hit me, because me and my two [children] were stuck in for 23 weeks. We couldn’t go out, [..] we couldn’t see anybody, couldn’t do anything, couldn’t do shopping. And having that person who’s your cheerleader, and who just absolutely is in your corner, [but who] can’t speak to you for more than five minutes, is absolutely soul destroying. […] I went 117 days without seeing him…’ (Partner of man in prison)

Service providers told us that the specific issues of family contact during lockdown were, in many cases, compounded by other problems generated by the pandemic such as financial insecurity, digital exclusion and access to support services. Children and young people were hit particularly hard by reduced contact with a parent in prison. Staff running support groups with these young people explained the move to online support by Zoom had meant the loss of a safe space away from home where they could discuss their feelings, and had caused many young people to disengage completely.

However, there were also some positive messages, including the creation of new and innovative creative projects with those young people who continued to engage with the digital alternative service. Staff also highlighted the possibilities to engage with families in more remote parts of Scotland, who would otherwise have been excluded. It is clear that staff and volunteers have worked hard and creatively to provide this support, which resonates with our wider findings about the third sector’s crucial role in mitigating pandemic impacts on marginalised groups (see for example Positives of lockdown for service providers).

‘Dangling the carrot’: the wait for information

In this context it is understandable that the introduction of mobile phones and video visits, both announced in April, gave hope to many struggling with the lack of contact. But as the weeks and months went by, anger and frustration set in. For context, Northern Ireland’s virtual prison visits began in April, but Scotland’s began in June). Despite the official SPS helpline for families, the overwhelming sense from those we spoke to was that information had been inadequate. They felt the official communication had been ‘diabolical’, that they hadn’t been able to find needed information, that there were no announcements, that rumours had confused them, that even instructions about how to access digital visits had been wrong.

There was a real sense of how much effort it had taken to discover needed information. People told us they had spent these months ‘badgering’, ‘constantly emailing’, ‘digging deep’ into the official policy documents, doing ‘lots of research’, contacting prison governors, MP’s, MSP’s, and being on Twitter and Facebook every day trying to find things out. Those we spoke to understood that there were legal and practical barriers to the introduction of these new facilities. But it was the delays and the lack of clear information that caused the most frustration, as more than one person described it: ‘dangling a carrot, but not quite within your reach’.

New rules, new dilemmas

Those who accessed virtual visits described their relief at finally seeing their loved one’s face again after several months’ wait. For those who struggle to attend in-person visits, due to lockdown or other reasons it was particularly helpful. As one service provider noted in a response to our survey of organisations:

The introduction of mobile phones and (especially) video visits is something we have fought for for years, and these are finally in place. (Service provider supporting criminal justice involved people)

As noted above, service providers identified digital exclusion as a particular issue and have provided equipment and practical support to facilitate virtual visits. But there were other difficulties too, including restricted time slots and technical problems. One person explained that the time slots, coinciding with school and nursery hours, excluded the possibility of her young child enjoying a virtual visit with her father. Others said that background noise had disrupted their conversation or that the arrangements didn’t feel private enough.

In August limited in-person visits resumed without any physical contact allowed (although children under 12 were exempt). Almost six months on from the beginning of lockdown, the resumed visits were hugely welcomed, but the new rules brought some new dilemmas. One mother told us she couldn’t take both her children because visitors are restricted to two at a time. It would be tricky enough to organise childcare, she explained, but she also wondered about the emotional impact on the child left at home.

At this point in an unfolding pandemic, missing a hug, struggling with technology or to speak through a mask are familiar experiences for most people. But these barriers to communication are particularly keenly felt by those attending actual or virtual visiting rooms, who bring with them so many worries about how their loved one is coping with life inside.


People who have a loved one in prison have been hit particularly hard by the lockdown restrictions. Although a diverse group, they are more likely to be affected by issues such as economic insecurity, particularly for families who have one parent in prison. Digital exclusion also disproportionately affects this group, complicating the good news of the virtual visits. What’s common to everybody affected by prison is that they are reliant on the prison and other agencies to facilitate contact with their loved one. In this aspect, the dominant sense was that they had been let down. When we asked people what they would like to ask the Scottish Government, a mother whose son was in prison said simply:

Why have we been forgotten? Why have we been so let down? That’s how we feel, let down. We have committed no crime. So why have we been let down and forgotten? That would be my question. (Mother with son in prison)

Betsy Barkas is a Research Assistant in the Criminal Justice stream of the study and is researching deaths in custody for a PhD based at the University of Glasgow and Scottish Centre for Crime and Justice Research.

Living through Covid-19 with type 1 diabetes: Emerging findings

Chris Bunn, an Investigator in the Disability and Health Conditions stream, shares emerging findings from interviews with people living with type 1 diabetes during the pandemic.

The Covid-19 pandemic has been testing for most people in one way or another. Those living with long term health conditions have had to confront the additional challenges of judging how to protect themselves from Covid-19 while still being able to feed themselves, adapt to new routines, access medical care and remain connected to their family and friends.

Early on in the pandemic, people living with diabetes were told that they face greater danger from Covid-19 than others. Small-scale studies, such as this one in China, emerged rapidly and suggested that diabetes increases the risk of death from Covid-19. Since then, researchers have conducted larger assessments of the connection between diabetes and Covid-19 outcomes, and have confirmed that there is a strong link. Responding to these developments, diabetes groups have played an important role in reassuring their members that they are not at greater risk of catching Covid-19, reminding them that for most the virus produces mild symptoms.

While such reassurances have been welcomed by many in the diabetes community, it is clear many of its members remain concerned about Covid-19. This became apparent to us when we launched our study and appealed for people to participate in interviews. We received a large number of replies in a short space of time from people living with type 1 diabetes who wanted to share their experiences. While we have also interviewed people with type 2 diabetes, we decided to respond to the groundswell of volunteers from the type 1 community and to explore with them what their lives have been like during this period.

The disappearance of specialist care

So far, we have interviewed about half of our intended target of 25-30 people. Most of the people we have spoken to have told us that their appointments with diabetes specialists have been cancelled and no new appointment date has been provided. While our interviewees have been understanding of the pressures the health service is under, many also expressed concerns about this loss of care. One described how eye and nerve-related complications from their diabetes are no longer being monitored, telling me that they feared this leading to preventable damage being missed. Several others have echoed this concern, describing how the cessation of regular screening for complications worried them. This is not surprising, given so much diabetes care emphasises the importance of monitoring the complications that can build up over time.

Others we have spoken with have given us accounts of how lockdown measures prevented them from starting new treatments. Two of our participants were due to begin using an insulin pump – a device which releases insulin into the body throughout the day, allowing patients freedom from having to inject themselves regularly. Insulin pumps are often recommended for people who are finding it difficult to meet the blood glucose targets that their doctors are pursuing with them, suggesting that Covid-19 related delays may be keeping these patients from accessing the treatment they need to attain better blood glucose regulation.

Common to all of the accounts we have collected so far is a sense that communication between diabetes services and their patients could improve. With the exception of one interviewee, remote consultation via telephone or video has not been offered and no information provided on how to access care if needed. In one interview this was a complaint that was emphasised, with the participant telling me that it would have been of great comfort to have had a list of services to contact in the event that different needs arose relating to diabetes.

Negotiating new routines

For people living with type 1 diabetes, routines can be important for managing their condition. The timing, amount and type of food that they eat and physical activity they do can make a big difference to their blood glucose levels. Unsurprisingly, for many of our interviewees the restrictions of lockdown led to changes to their usual activities and foods. Some of those we spoke to described how this led to fluctuations in their blood glucose levels which they struggled to contain. Some increased their insulin consumption, but others accepted higher levels, preferring not to risk hypoglycaemia at a time when they feared the potential consequences of hospitalisation.

The impact of disruption to routines was not just described as a challenge to physical health. Our interviewees spoke of how they have struggled with the loss of social contact that their routines provided them with. Whether through work, socialising or even visiting favourite shop keepers, some of those we spoke to found the absence of in-person contact made them feel down and question their mental health.

Some silver linings

While the challenges of living with type 1 diabetes during the Covid-19 crisis have dominated our interviews so far, some have described some positive developments in their lives. One interviewee told us of how the furlough scheme had enabled them to take a break from working which they had not had since they entered full time employment at the age of 16. This break gave them the opportunity to reflect on the direction their life was taking and decide to enrol in and start an access to university course, with the aim of improving their future.

Another of our interviewees spoke about how lockdown has allowed them to witness the growth and development of their newborn baby in a way that would not have been possible without lockdown and furlough. This person emphasised that this was an experience that could never be taken away from them and was a source of emotional strength during an otherwise difficult period of life.

Looking ahead

From the interviews we have conducted to date, it is clear that people living with type 1 diabetes in Scotland have faced significant challenges during the Covid-19 pandemic. While this blog post has shared just a snapshot of what we are learning, it underscores the most important message we have been given from the community: diabetes care has faced massive disruptions and many patients are not being communicated with.

While it is too early to know the full extent of the consequences this disruption will have for the health of those living with diabetes in Scotland, early warning sirens are starting to sound. A study in Naples, Italy has reported that foot amputations among diabetes patients with foot ulcers have increased three-fold in 2020 when compared to 2019. As the Covid-19 pandemic continues, diabetes care in Scotland and beyond needs to adapt rapidly to limit the damage that avoidable complications can do to the lives of people living with diabetes.

If you or someone you know is looking for guidance on managing diabetes and accessing care at this time, Diabetes Scotland has some useful information. They also offer a helpline, which you can reach on 0141 212 8710, Monday to Friday, 9am to 6pm, or by email – helpline.scotland@diabetes.org.uk

Chris Bunn is a Lecturer in Sociology at University of Glasgow. His research is focused on living with, managing and preventing long term health conditions.